A Four-Month Roller-Coaster Ride

If I am really being honest, my roller-coaster ride began in July of 2018. I was working incredibly long hours (up to 18 hours a day!) doing a technical system implementation that was thus far the highlight of my career, as it would affect 7,500+ employees globally. I was mainlining caffeine like it was water, sleeping for around 4 hours a night, and eating any sugar I could get my hands on to get me through the afternoon slumps. But it all paid off. The system implementation went off without a hitch, my executives were pleased as punch, I received some accolades at work, and my resume had some new additions. Things were coming up roses for me.

But as I came off of the high of a success, I figured that I probably shouldn’t be frequenting Starbucks so often that all the baristas knew me by name, and that sleeping should happen wayyyy more often than I was currently doing. So with no major projects on the horizon, I started weaning myself off of caffeine and sugar with the intent of sleeping more at night. As this happened, I went through the normal withdrawals, so I knew that headaches, shakes and lightheadedness was to be expected. Blood sugar drops happened too and I got Hangry when I missed a meal!

As the days of July faded into August, I noticed that while I had given up most of the coffee (from 3 Venti’s a day to 1 Grande – yay for progress!) and I had cut out sugar almost completely, I still wasn’t sleeping. I was averaging about 4 1/2 hours per night still, but now I was waking up with night sweats. Without the caffeine and sugar, I was feeling super lethargic and I noticed that I didn’t always have a great appetite. But I attributed it all to just trying to ease back into a “normal” life after a system implementation that had taken up 3 months of my life. So I figured I would go to the doctor later. I still had some major deadlines to meet at work, and I was working hard for the money, so hard for it honeyyyyy.

“Strength grows in moments when you think you cannot go on, but you keep on going anyways.”

As September past and October began, I realized I still was only averaging no more than 5 hours a night. And this had been going on for months. While I could attribute a portion of that to my crazy insane work schedule from May through July, August through October should have been fine. I was eating less, my energy levels were depleted and I wanted to sleep all of the time. I also had the world’s worst night sweats. I was soaking the sheets a minimum of twice a night and a maximum of four times a night. I literally had to sleep on towels because I didn’t have enough sets of sheets to constantly change my bed. With all of these symptoms it looked like it was time for a trip back to my oncologist.

For those of you who don’t know, in 2015 at the tender age of 25, I was diagnosed with a rare form of a blood cancer called Essential Thrombocythemia (ET). It’s a really long and complicated way of saying that my DNA has some mutations and I created way to many platelets as a result. This is monitored by an oncologist and can be managed, but can never be cured. Normally this condition affects more females than males, and the majority of people afflicted are over the age of 65. Naturally, I already knew I was special – my parents told me I was a special unicorn my entire life, I’m lucky, I know– but this was a level of special I didn’t quiet appreciate. Thankfully, people with ET can generally expect to live a normal life as long as they talk to a hematologist/oncologist who will monitor their condition.

So I called up my oncologist in the beginning of October and told him what was going on. He expressed some concern, as I was already on medication that should have prevented the night sweats, fatigue and decrease in appetite. Little did I know that this would change my roller-coaster ride from a small hill, to Top-Thrill Dragster in a short amount of time.

Over the course of the next four months (Mid-October through the end of January) I was subjected to a bone marrow biopsy and numerous blood draws, as well as multiple doctors appointments in multiple different cities. I traveled a lot and at one point I had five doctors appointments in six days. It was exhausting, physically, mentally and emotionally. I cried so much because I was so stressed. There were consultations where diagnoses were discussed ‘Is it…? Isn’t it..?” Tensions were running high between my husband and I, and for my family and the few friends in the know. I took a leave of absence from work for a while, because I simply couldn’t handle the stress while doctors debated about my diagnosis.

Blood for testing, but wasn’t positive I had any left to walk out with!

Finally, after all of the ups and downs, books worth of test results, and so much medical jargon it made my head spin, my oncologist sat me down and gave me the news. My cancer had progressed. I have secondary myelofibrosis.

What used to be a manageable condition with a normal life span, had now progressed to a more complex condition with a markedly decreased life-span. My bone marrow had begun scarring over, and when that happens, the cells that are created there struggle. Eventually over time, it leads to anemia, gout, tumors, and more ugliness that I was not ready to hear. The cancer was called myelofibrosis, but it was called secondary myelofibrosis for me because it meant my original diagnosis of ET had progressed.

The terminology and the news was overwhelming. What was I going to do? What were my treatment plans? Did I have options? The doctor didn’t have much great news here either. Unfortunately, myelofibrosis has no cure, and generally most people only survive an average of 5-6 years after diagnosis. He did caveat that with the fact that many people are older when diagnosed, but there just isn’t a cure. Also, some people can live as long as 20 years with this condition, or as little as 1 year. They can treat me with chemotherapy to suppress the symptoms, but I will never get better. Over time I will get worse, and eventually I may be a candidate for a Stem Cell Transplant (SCT), where I have the potential to be cured, but the odds are not super, as only 40-60% of people who get the SCT survive the process. It’s pretty harsh on your system. Through all of these statistics and a boatload of more information on support, resources and discussions about a treatment plan, all I could think of was this:

How do I tell my parents and my husband? How do I tell my friends?

I don’t have a great answer. For anyone going through something similar, I am willing to share my experience. You take everything one day at a time. You handle it with as much grace as you can and you allow yourself to grieve, because trust me, you will grieve. Allow yourself to feel all of your emotions. Before telling people, explain that you need them to be there for you and that you don’t have the emotional wherewithal to deal with their emotions in what is bound to be a tough conversation. I chose to have a few face to face conversations, while the rest of my family and friends will be notified by the blog post. It’s not that I don’t care about all of the people in my life, but I just don’t have the energy or time to reach out individually to all of them.

Right now, I am working on connecting with a transplant doctor to look at what would make me a good candidate in the future for a SCT, and what the process may look like. I’m also on some oral chemotherapy pills for symptoms and getting blood work done a lot more frequently than I would like. I feel like a pincushion. I have changed my diet, and I am spending time sleeping when I can, and spending time with my puppy and my husband. Visiting with family and friends has been a fantastic source of strength for me too. While looking to the future can sometimes cause pain, I am trying to move forward in life. I am looking at the next big project at work, and what it will take to get a promotion! I am also making an effort to be 100% present when I am with the people I love. I want them to understand how much they mean to me while I am around to tell them. All of the social media apps can wait. I just don’t have the time for them if I want to enjoy every single solitary second with the people who matter.

“What a slut time is. She screws everybody.”

John Green A Fault in Our Stars

I will be updating more as things progress and as I learn more. But don’t forget, listen to your body when it’s telling you that something is wrong, because it usually is correct. Also, listen to some great music for me and send me some suggestions! I love all types of music and its super soothing on days when I can’t get my mind off of things.